Meet Robbi Van Schoick

Name: Robbi Van Schoick

Age: 43

Where do you call home? Georgia

Education: Bachelor’s in Science and Master’s in Public Health

Who do you live with? I live with my parents and my rescue dog and cat near Athens, GA.

What’s a typical day for you? I make as many choices as I can in order to live life to the fullest. Usually, I have appointments and try to keep myself as busy as possible. That’s a tall order for someone who doesn’t work, but I do my best.

How long have you known you are living with FA I’ve been living a long time with this disease. Doctors couldn’t diagnose until genetic testing, but specialists thought I had FA as a child. They hoped that it was Charcot Marie tooth disease until my symptoms got worse.

Are there any others with FA in your family: I had a middle sister who also had FA. She passed away in May of 2016. No one else in my family has it.

Describe your transition from walking to walker/wheelchair: I never used a walker. I walked until I wasn’t physically able. The closest I came is pushing my wheelchair in middle school and I put my books on my seat. I was just very reluctant like most people. I started using a wheelchair partly at the age of 12 and started using it full time at the age of 13. I used a scooter in late middle school through early college. I was able to drive until I started college.

What do you like to do to stay active and what type of exercises work for you to stay strong? I love to be with my sister Katie and her 3 girls. I also love to take care of my little dog who is pretty much my baby. I am 100% girl so that means I can rack up a pretty mean Mastercard bill.

Do you have any hobbies or special interests: I helped a professor teach for years. He’s at UGA. The class is a first-year odyssey seminar called Communication with People with Disabilities. It is a good use of my master’s degree. We started the seminar 12 years ago.

What is a good trick to make daily life easier: I try to enjoy the little things in life. Lattes are my favorite. I also enjoy my subscription to Spotify, because music is one of my escapes. I also recommend headphones made by Hayday from Target for those who need background noise cancellation.

When FA gets you down, what do you think/do to feel better: I make as many choices as I can to make life a bit easier. Even if I only choose my makeup, the clothes I wear, my hairstyle, jewelry or not, and what I listen to on Spotify. That has to be enough for me.

What is one way living with FA has POSITIVELY affected your life: FA is a natural Botox for my face.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Even if you can’t afford many options, you can just do your best to make little choices along the way that make life easier.

“I have FA but FA doesn’t have me.” What does this statement mean to you? How do you live your life in the face of adversity? That’s a great mindset.

Tell us a little more about you… I’ve written several pieces of poetry and short stories in my life. Two of them have been published. The first publication I was a co-author on a journal article for kinesiology. The second was a book I wrote as a fundraiser for FARA about my middle sister Becca. It’s a very positive story and it’s when she graduated from high school and goes to college. The book is out on Amazon, and it’s called Becca Smart and Strong. I wrote it a few years ago. It took a while to get published and illustrated, but thanks to mom and dad we got it done. It’s her story and I just had to share. I hope that young readers will be inspired.

Interviewed by
Andrea Kiess